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Monday, October 3, 2011

We have been living in the land of limbo for quite some time now. We previously have always had a plan of attack and with every step ~ charged forward.

We have traveled back and forth to The Institute with the same group of families each time. With each new trip, it has become more than obvious, the gap has widened that much more between us. The families are passing us by and so is The Institute. With each trip, there are two days of lectures. This past time, the lectures were a complete waste of our time. They did not pertain to us in any way, shape or form. They not only didn't pertain, but they made us feel a deep, deep sadness.

Everyone else is progressing and we are at the bare minimum. With each trip, I've done my absolute best of making peace with this. I tell myself over and over, we are just on another path. That's not us. This is us. After two years and in light of how hard we've worked, this line of thinking is proving to be too much. I surely don't expect them to hang back for us, but it just lets me know that something needs to change.

Going to The Institute is taxing in every way: financially, mentally, physically, emotionally, you name it. If Aviana was truly benefiting greatly from this program, we would be back, every six months, for the rest of her life. At this point, she is not benefiting enough to continue traveling back and forth.

Lately, if the thought of how to proceed enters, we have a way of pushing it away just as fast as it arrived. It's as though we are living with the aftershocks of a monstrous earthquake. The earthquake being the program. We pretty much shut down towards the end of The Honeymoon. This period of time did not show us anything, either way. She did not slide back in a way in which we both exchanged that knowing glance and immediately had to jump back into the program with both feet. The Honeymoon also proved that not much harm was done by avoiding the frantic, often times ~ nauseating, incessant pace of the program.

Limbo is no place to be. It is unsettling. For us, when a concrete plan is lacking, it throws everything off. Every day feels wishy washy, and awful.

So where does that leave us? Well, I started a modified program at the beginning of September and have been working through. They ramp us up slowly, but we hadn't even started to pattern again. We start patterning today. The program we are going to incorporate for ourselves is one that is manageable and much less stressful. Dave and I poured every single ounce of our being into Aviana for two years. In that time I feel we did the work of approximately 5-6 years. With the amount of results we got, we proved to ourselves that we could back off some. So that is our plan, to back off. How much is yet to be seen, but we now have a good idea of where we are going.

We still think she will benefit greatly from the program, but just not at the pace they recommend. This has been a very sad realization, but it has been a long time coming. Now is the hard part, learning how to live this way. Learning to somewhat accept our reality, but still help her greatly.

This is our time to find some sort of balance within our family. This is our time to back some off from Aviana and concentrate on not just ourselves individually, but also Dave and I as a couple. We only get one run through this life and we are too young to completely forget about ourselves.

This has proven to be one of the most trying times of my life. All of the terrible things many of the doctors said channel through my mind. They attack me throughout the day, but especially at night. We now realize, they were right! They were freakin' right! This realization is a bitter pill to swallow.

UC Davis makes us wonder. We trusted them most, much more than Kaiser. They make us downright angry now. They make us question why. This is just merely a snapshot of how it all went down, there was so much more than this. I asked them on a scale of 1-10 how bad the damage was to her brain? They told me it was a 3. I carried those words with me. Through every new doctor I encountered, and every new horrible prognosis, those words were my ace in the hole. They filled me with confidence and guided me through the roughest of times. This was UC Davis for God's sake. This was the place. If anyone knew, they did, right? These were the people, weren't they? Those words covered me with a thick exterior. An armor that protected me through the worst of the worst. While family and friends were falling apart all around me, I could stand there impenetrable. Unwavering, if you will.

These other doctors were also there to prepare us, to tell us the cold, hard truth. The grim reality. I clung to UCD's words and would not let them go or any others in. How was it that they could have seen a 3 when every one else saw a 'Game Over' flashing on the screen? Why didn't I listen to those other words? Why didn't I flinch when they said, "look here, her entire brain is stroked. Can you see, all of the main areas are affected? Do you see this, she will never walk, or talk again? Can you see here, all of this is not supposed to look like that. Can you see, this is what your brain and my brain look like, can you see how much damage has been caused by the blunt trauma? Can you see? Can you understand? Can you compare? Can you? Can you? Can you? Do you understand what we are saying to you?"

In retrospect, I wonder about that stupid girl with her blinders on. The girl who shut down everyone else and believed in one. The girl who stood strong, and pulled everyone else onto her bandwagon. Why? It looks like I was the stupid one. I was the idiot who put all my eggs in the one UCD basket! It looks like they all had it right and I had it wrong. UCD had it very wrong. Oh well, right? Who was to know how this would turn out? Hindsight is always 20/20. I know we made the best decision we could at the time. I know I put my faith in who I thought would be right, only for them to be wrong. Wrong all along.

I feel duped.

We feel duped.

To this day, neurologists avert their eyes, because when they put her scan up, they have a hard time looking me in the eyes. Yes, it's that bad. And sure there are people who have horrific scans, but are standing there fully functioning. As you may know, this is not the case with us.

Oh well. It is what it is. We will make the best of what we've got. We will care for her and love her endlessly because in the end, she is obviously here for a reason. She deserves the best and most of us. All this bullshit is not her fault. She didn't/doesn't deserve this and she is just trying to love and be loved. She is just trying to enjoy the life she has. So that will be our goal ~ to help her recover, but to also let her have a life. We will no longer work her fingers to the bone either. What kind of life is that? From experience, it's not a very good one ;o)

Please keep us close in thought as we proceed. I have been so scared to let go. I am terrified to loosen my grip because to me, it feels, in a small way, like giving up or being defeated. I know it's neither and we will never, but it just feels a little like it.

8 comments:

You guys have done beyond amazing. I know that you know what is the absolute best for her, you, and your family. You have given every ounce of every aspect of all of your lives. I am so glad to hear that you made this decision and can now move forward. Move forward knowing that your life can now proceed with many new adventures, exciting days, and happy memories to come. You should proceed knowing that you did it, you accomplished what was possible and even what wasn't possible. Don't be scared or feel defeated in the least. You did the impossible! I know that she will continue to make gains, just by moving forward and having more experiences in real life. I will keep you in my thoughts and prayers as you make this adjustment. Sending lots of love always.

having gone though the transformative process that came with finding out my fiance has MS, and the OMG stress that comes with frantically trying to learn to care for someone who quite suddenly had become dependent on me for nearly everything (he lost feeling from the knees down during the flare-up where the 4th hospital was able to FINALLY diagnose what was happening, but we lived on a 3rd floor apt with just stairs... um, problem). it's traumatic to know your life has been uprooted and reorganized for a loved one, and it's just as traumatic to think of not doing everything you can for them all of the time because they don't deserve to suffer any more than they already are. it was traumatic to know the dual income household i thought was my future was now riding on my shoulders alone. how do you work AND care for them? where's the balance? and then, how do deal with their reactions, because they're adjusting too, and that never leaves your mind, but doesn't make it easier to not resent the tears, pain, sleeplessness, and ghosts of what was "supposed to be," and doesn't make the unholy level of frustration all that comes with all those things any easier to tolerate.after walking our own private hell, what we figured out worked for us was listen to what FEELS right. not so much the analysis and statistics and doctors, those things will always be in the wings, but both your body and aviana's will tell you when things are too much (physically, but perhaps more importantly mentally). and what we found was if we listened to that, the stress levels decreased, and as the stress levels decreased, progress slowly began to be more obvious and a whole lot less painful. i do fully believe that nurturing your soul and that of your family is just as important as all the physical mumbo-jumbo, and without giving that it's due time, everyone becomes overwhelmed and lost. my hardest and longest learned lesson was to take the time for me when the stress mental loops began (i have a feeling you know well what those are like), no matter what, because taking that time to keep things manageable made me happier, and in turn him feel like everything was more manageable, and made him more optimistic and want to work harder. just like you mentioned before you can feel how aviana is reacting despite the communications difficulties, you can feel that same part of you, and my guess is she can too. so BE GOOD TO YOURSELF! and DON'T BEAT YOURSELF UP for listening when stress tells you to slow the heck down. you'll all benefit.you are amazingly good, dedicated, loving parents, and you should reward yourself for that often!

I think initially after accidents our brain goes into survival mode. And maybe we wouldn't have been able to handle such cold, hard truth. I'm dealing with the exact same thing. I feel like the second year was much harder than the first - coming into realization that this was IT. It was a delayed grief. And it was a grief that was evident every single time I watched another kid try the same thing and be successful. So what's the explanation? Who knows? But I'm really glad you made this decision for your family.

I think you listened to and heard what everyone else would have. YOu had a bigger then life happy little girl, and now they throw all these awful stuff at you, make a decision to save her or not. She could have been a 3 you never know. You made the decision almost every parent out there would make because you love your child, you want her to be alive and you dont' want to give up on her. No one can see in to the future.I think the plan you guys have now sounds a whole lot better. Sounds more like a life and living to me. Although she might not improve the way that you want she might improve in other ways you can't see, because once you relax and let go of the hopes and dreams etc from all this and relax and maybe feel a little happier when maybe you can accept all of this (I don't know how but people mfind a way I guess) but maybe once there's some happy normalcy Avi will seem happier and brighter as well because she will get to be more liek a daughter and less like a 24/7 student. I'm not saying what you did was wrong I am saying what you did was so right but I bet she will enjoy just being a little girl for while and being aprt of a family who can do things when they want and not be on a minute to minute schedule. I still sya do some hyotherapy, I bet she would love to ride, it would be something different and something more freeing, she might feel heavy with gravity but the movement mimics walking and that would probably feel wonderful to her. Don't forget to fix your hottub, she can relax while you all sit under the stars, maybe a little beverage.....

I agree - you have to do what feels right. You have to do what is best for all of you. For two years you have been chugging along at full steam, and slowing down is probably the best thing right now. Being a caregiver is TOUGH work, no matter how you look at it. It is tough emotionally and physically. It can consume you, and caregivers and patients need their breaks. Heck - I feel overwhelmed with my appointments and scheduling infusions, and my schedule is nowhere near as busy as yours.

You both (and your parents and friends) have done so much for Avi. She has achieved things that many thought weren't possible. She looks so healthy in the pictures you just posted! I am positive that she can feel the love around her. We love you guys, and we're here if you need anything at all. Hug that little angel for me.

Like I said in my last post, regarding the jaded post.It is yours and yours alone, the path, the life, the everything.Do it in the best way you know how that is fulfilling for all of you. Aviana is a brightest of souls. You can see it in her eyes. Your husband seems the dearest of fathers and husbands. And, you are indeed, a wonderful mother. Continue on your path and plug into that maternal intuition and spirit. (hugs)

i feel for you. i know you & dave (and your entire family) want and have done the best for Avi. you can't blame yourself for listening to the one doc/hospital offering the best diagnosis. the most hope. .....hope keeps us alive. we seek hope - even the smallest glimmer of hope in the face of adversity can give us the strength to carry on no matter how difficult the road that we must travel.

i agree that the time has come to re-evaluate the path you are traveling. 'the program' is not a one-size-fits-all ..... you have to adjust 'the program' and tailor it to fit your needs as you go along.

each person is indvidual.....moving at their own pace...achieving goals and accomplishments in their own good time. there is not time clock to mark when each item should be checked off the list. it happens when it happens

to that end i congratulate you on your decision to make changes to avi's 'plan' to customize it to fit into your life rather than to have your life fit into the plan!

live life to the fullest. enjoy every moment with avi and dave and your family and friends. keep plugging away at 'the plan' but don't put 'the plan' before 'the life'

i still foresee great accomplisments for avi. she may never achieve 'normal' BUT she WILL ACHIEVE!!!! and it is all because of YOU! you are her staunchest ally. her loyal cheerleader. and her fearless coach.

because of YOU avi will live her life to the fullest <3 full of LOVE....full of LOVING.....full of LIFE <3